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Pequeño Leoncito: an autism curriculum based on the Latino experience with autism

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Pequeño Leoncito: an autism curriculum based on the Latino experience with autism

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Content PEQUEÑO LEONCITO
Pequeño Leoncito; A Curriculum Focused on the Latino Experience with Autism
Capstone Project Proposal
Cynthia Hernandez
University of Southern California
Suzanne Dworak-Peck School of Social Work
DSW Program
Ron Manderscheid, Ph.D.
August 2023
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TABLE OF CONTENTS
Acknowledgments 1
Executive Summary 2
Abstract 7
Positionality Statement 8
The Problem of Practice and Literature Review 9
Grand Challenge 11
Effects on Target Population 12
Stakeholder Understanding of the Problem 14
Conceptual Framework/Theoretical Framework 16
Logic Model 18
Project Description 19
Theory of Change 22
Solution Landscape 22
Prototype Description 24
Likelihood of Success 25
Methodology 26
Human-Centered Design 26
Design Criteria 27
Market Analysis 27
Financial Plans 28
Implementation Strategies 28
Methods for Assessments of Impact and Social Change 28
Stakeholders Involvement 29
Communication Strategies 30
Implementation Plan 31
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Methods for Implementation 31
EPIS Implementation Framework 31
Budget 33
Methods for Assessment 34
Challenges 34
Leadership Strategies 35
Ethical Considerations and Applying Design Justice Principles 36
Conclusion and Implications 37
Implications for Practice and Future Use 38
References 40
Appendix A 53
Logic Model 53
Appendix B 54
Theory of Change 54
Appendix C 55
High Fidelity Prototype 56
Appendix D 57
Assessment Questionnaire Responses from Pilot 57
Appendix E 58
Design Criteria 59
Appendix F 61
Assessments and Evaluations 61
Pre-course and Post-course and three, six, nine and, 61
12 months, Post-Course Assessments (English) 61
Post-course Evaluation English 65
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Pre-course and Post-Course Assessments and three, six, nine and 12 month,
Post-Course Assessment (Spanish) 68
Post-Course Evaluation (Spanish) 72
Appendix G 75
Calendar of Events 75
Appendix H 77
Infographics (English) 77
Infographics (Spanish) 78
Appendix I 79
Brochure (English) 79
Brochure Spanish 81
Appendix J 83
Gantt Chart 83
Appendix K 85
EPIS Framework 85
Appendix L 86
Start-Up Budget 86
Appendix M 87
First Year of Operations Budget 87
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Acknowledgments
To my better half, my husband of 33 years, Juan Enrique Matos, I couldn't have
completed this journey without you; thank you for carrying the load and for loving me.
To my mother, Mildred Hernandez, I would not be here if it were not for you instilling
the value of education in me. Thank you for always having faith in me. I owe this degree to you.
To my father, Dario Hernandez, I felt your love and support for me from miles away.
Thank you for drying my tears of exhaustion and reminding me how proud you are of me.
To my son, Dario Matos, thank you for your insightfulness and constructive criticism;
you pushed me beyond my limit. I couldn't have done it without you.
To my sister Celina Hernandez, thank you for always bringing me out of the darkness
and making me see the light; you found the positive for me where I could not see it.
To my little sister Stephanie Hernandez, thank you for not letting me give up; for
listening to me when I called you crying, telling you I could not do it anymore; for making me
want to be an excellent example for you. Deep down, I knew I couldn't fail because of you.
To all the professors that helped me along the way, thank you.
To my mentor, Cassandra Fatouros, people like me make it because of professors like
you. Your faith in me made all the difference. Thank you.
To my best friends, Lisette Alvarez and Wanda Gonzalez, your unconditional support
and encouragement, made the difference between me making it through these years or not. I
could not have done it without your unconditional support. Thank you.
To Dylan, my son, and inspiration for this journey, you taught me that silence is no
longer an option. You have been one of the biggest blessings in my life, and I would have you all
over again, just the way you are. Thank you for teaching me to draw on my strengths, address my
weaknesses, and appreciate the small things that make all the difference, such as when you give
me "real" eye contact or when your smile brightens up my world. It was worth it, just for you;
this degree is yours. Dylan-Mommy did it!
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Executive Summary
Problem of Practice
The recent uptick in Autism Spectrum Disorders (ASD), also often referred to as Autism,
has emphasized the need for enhanced caregiver education, understanding, and acceptance of the
diagnosis in the Latino community. Autism is a developmental disorder of variable severity
characterized by difficulty in social interaction and communication and restricted or repetitive
thought and behavior patterns (Elemy, 2020). In the United States, one in 36 children is
diagnosed with ASD, and Latino children now compose the largest ethnic group with ASD
("Data and statistics on autism spectrum disorder | CDC," 2022). The Associated Press (2023)
reports that as many as 3% of Latino children have the disorder.
However, in the Latino community, culture, low educational levels, and the high stigma
regarding ASD significantly contribute to Latino children's lack of caregiver acceptance,
resulting in delays in access to care (Rivera-Figueroa et al., 2022). In response, the Pequeño
Leoncito (Little Lion), a curriculum focused on the Latino Experience with Autism, was created
to bridge the educational gap in Latino communities. The curriculum, which the author will
facilitate, focuses on the Latino caregiver's acceptance of the child with ASD; to identify signs of
behavioral health conditions and access services readily.
Nearly all (98%) of children with ASD report feeling stigmatized, discriminated against,
and unaccepted in society (Lodder et al., 2019). The experience is exponentially higher in the
Latino community, resulting in more than three-quarters (78%) of children with ASD suffering
from depression and anxiety. In the literature, many ASD programs for caregivers attempt to
resolve the lack of ASD education; however, no programs address the cultural influences
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impacting ASD acceptance. Notwithstanding, the programs failed to address the core of the
problem, which is the rejection of the Autistic child by Latino caregivers. Lack of acceptance can
hinder the parental ability to advocate and access available resources, negatively interfering with
the parent/child relationship, and can often result in insecure attachments and poor emotional
responses from the child with ASD (Di Renzo et al., 2020). Consequentially, Latino children
with ASD face marked barriers to successful integration into society, resulting in higher
incidences of behavioral health disorders, more severe ASD symptoms, and underutilization of
services (Cohen & Miguel, 2018).
Grand Challenge
Prevention and early intervention are at the crux of the Grand Challenge of Ensure the
Healthy Development for All Youth, one of the 13 Grand Challenges for Social Work, a flagship
program by the American Academy of Social Work and Social Welfare (AASWSW) (Barth et al.,
2022). While early preventive measures are critical in all youth, those with early markers of
special needs are at a heightened risk of developing behavioral health disorders and warrant
special attention (Lubben et al., 2018). In addition, untreated behavioral health conditions
negatively impact the youth (Jenson & Hawkins, 2018). Essential to reducing behavioral health
conditions is the caregiver's ability to accept and foster positive relationships with the Autistic
child (Di Renzo et al., 2020).
As a result of this concern, the Pequeño Leoncito (Little Lion) was created and provided
an innovative intervention with goals closely aligned with the Grand Challenge of Ensuring
Healthy Development for all Youth. The curriculum emphasizes the achievement of caregiver
acceptance of the Autistic child. Since empathy is a crucial component of Autism acceptance, the
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curriculum adds innovation by including an ASD simulation experience for caregivers (Di Renzo
et al., 2020). A recent study found that simulated Autism experiences are highly efficacious, as
participants exposed to simulated ASD experiences positively changed their perspective and
gained a sense of empathy toward the Autistic individual (Sarge et al., 2020).
Design Thinking Methodology
In response to the need, this author employed the principles of human-centered design to
identify a solution that meets the needs of the Latino community. First, the author conducted a
Community Based Participatory Research (CBPR) process to identify the problem the
beneficiaries perceived. The author conducted ethnographic interviews with Latino beneficiaries,
family members, and others in the Autistic child's microsystem (Hernandez, 2022b). Discussions
and observations were held with various ages and functioning level beneficiaries to ensure a
wide-scope perspective of the problem. Finally, the author distributed questionnaires to
understand the caregiver's knowledge about Autism, the influences of stigma, and cultural
pressures within the community. The systemization of the qualitative data gathered led to the
conclusion that the high levels of stigma were at the root of the rejection of the autistic child,
which correlates with delays in seeking professional help (Di Renzo et al., 2020).
Theory of Change
The conceptual framework used to create the curriculum, Pequeño Leoncito (Little Lion),
builds upon the Transformative Learning Theory. The essence of this theory of change is that
authentic learning derives from the ability to focus on different understandings of old
perspectives and create new perspectives based on emotional and logical challenges to previous
understandings (Valamis, 2023). The curriculum's focus on caregiver education, empowerment,
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and caregiver feelings of self-efficacy are proven to lead to acceptance of the Autistic child,
making the curriculum goals feasible (Stahmer et al., 2019). Consequently, caregivers who
engage in the curriculum with fidelity will be better equipped to advocate, seek early
intervention services, and be more accepting of the child, resulting in lower incidences of
behavioral health conditions (See Appendix A). The curriculum intends to aid caregivers through
the process of disorienting dilemmas in which they begin to evaluate past ideas; self-
examination; the engagement in critical assessments of assumptions; planning a course of action
and transformation, which are the core steps to transformative learning (Valamis, 2023). The
newfound knowledge makes caregivers feel liberation and relief from societal pressures to have
typical children (Casillas et al., 2017) (See Appendix B).
Best practices when educating the Latino population include (a) providing culturally
sensitive information, (b) speaking in their native language, and (c) demonstrating a fundamental
understanding of their cultural beliefs (Lopez et al., 2019). While the proposed solution will
require investments in time and funding, the curriculum will result in greater acceptance from
caregivers, leading to increased utilization of services, making it a worthwhile investment.
Professional Significance
The Pequeño Leoncito (Little Lion) curriculum uses integrated strategies leading to ASD
stigma reduction in Latino communities. Stigma reduction is paramount to the acceptance
of a child with ASD and accessing early intervention, which can result in improved long-term
prognosis and prevention of behavioral health concerns in youth, again aligning with the Grand
Challenge Ensure Healthy Development for All Youth (Ebrahim, 2020). Finally, the data from
the literature exemplifies that education is vital to access to care in Latino communities.
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Implementation Plan
The development and implementation of the Pequeño Leoncito (Little Lion) are
estimated to take one year. During the first quarter, the author conducted extensive Community-
Based Participatory Research to explore the cultural implications of ASD and the educational
needs of Latino caregivers, thus creating a solid approach to the program (Hernandez, 2022a).
During the second quarter, a multidisciplinary team (e.g., psychiatrists, developmental
pediatricians, psychologists) with expertise in ASD became an integral part of the curriculum
development, resulting in their attestation to the validity of the curriculum based on the gold
standards for educating Latino caregivers. The program's development is in its third quarter,
which includes leveraging networks and professional affiliations to ensure access to community
partners, and resources and funding opportunities to sustain and expand the program.
The program's implementation is estimated to occur in the fourth phase, which begins in
January 2024 (See Appendix C). Throughout this process, the author will leverage community
partners and professional affiliations to continue to build an evidence-based, innovative
curriculum that will increase access to funding opportunities and overall program sustainability.
Furthermore, the last phase includes solidifying contracts with employees and reconnecting with
potential referral sources. As part of this program, Pequeño Leoncito (Little Lion) will offer
professionals working in Latino communities the opportunity to enroll in a culturally responsive
training program. Finally, upon successful implementation and through ongoing evaluation and
program modification (as needed), there are opportunities to scale the program, including
expanding to other cultures and communities across the country.
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Abstract
The upswing in Autism Spectrum Disorders (ASD) diagnoses in the United States has
brought to the forefront the need to "normalize" neurodivergence, a child whose brain functions
differently from what is considered "normal" in the Latino community. Furthermore, the
prevalence of ASD has increased exponentially, making Latinos the most prominent ethnic group
with ASD (CDC, 2022). Research indicates that Latino caregivers have greater incidences of
inaccurate beliefs about ASD, lack familiarity and acceptance, and the cultural implications tend
to be negative, resulting in delays in accessing care (Rivera-Figueroa et al., 2022). Nearly all
(98%) of children with ASD report feeling stigmatized, discriminated against, and unaccepted in
society (Lodder et al., 2019). The experience is exponentially higher in the Latino community,
where more than one-quarter (78%) of Latino children with ASD suffer from depression and
anxiety. The Grand Challenge for Social Work, Ensure the Healthy Development for All Youth,
provides the fabric to address significant societal issues by being the foundation for preventing
mental health disorders in youth. The Pequeño Leoncito (Little Lion), a Curriculum Focused on
the Latino Experience with Autism, with instruction in Spanish, addresses the need for education
as a best practice and is the first step toward caregiver acceptance, a crucial component of
parental ability to advocate and access available resources (Cohen & Miguel, 2018). The
program's innovation stems from the focus on the Latino culture, the inclusion of an ASD
simulation experience, and its emphasis on acceptance of the Autistic child (Hernandez, 2022).
The curriculum has the potential to be scaled beyond its current context to include other cultures
and expand to different geographic settings.
Keywords: Autism, Stigma, Neurodivergence, Plasticity
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Positionality Statement
As a Hispanic woman and the founder of Pequeño Leoncito (Little Lion), I have a
personal perspective regarding the stigma experienced by Latino caregivers of children with
special needs. In the Latino culture, using words such as "Autism" is frowned upon. In my
family, Autism was a forbidden word, and family members immediately silenced me when I
mentioned it. The cultural belief is that if you say specific terms, such as Autism, "out loud," you
are "calling" the condition to come to you or your children. Latino families often discourage
caregivers from talking about the child's symptoms by minimizing or ignoring them or telling
them they do not observe the behaviors; therefore, they must be a part of the caregiver's
imagination. The family pressure to "hide" the child's symptoms often leads Latino caregivers to
convince themselves that the child's behaviors are typical, leading to non-disclosure of such
behaviors to medical professionals. As in my case, cultural pressures often delay seeking early
intervention services.
Consequently, many Latino children are not treated in the most crucial years of brain
development when the brain has plasticity and is adaptable to neurological changes. The
implications of sharing the same culture as the beneficiaries of the design have been set forth
herein. Thus, I strive to recognize my biases and how they may shape my program design.
However, I have taken the stance that silence is no longer an option, as with silence, there is no
change; with silence, there is no awareness, and with silence, shame remains.
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The Problem of Practice and Literature Review
Nearly all (98%) of children with ASD report feeling stigmatized, discriminated against,
and unaccepted in society (Lodder et al., 2019). The experience is exponentially higher in the
Latino community, where more than one-quarter (78%) of Latino children with ASD suffer from
depression and anxiety. Autism (also referred to as ASD) is a neurodevelopmental disorder
characterized by deficits in social development, communication, and repetitive or restrictive
behaviors (Elemy, 2020). Unfortunately, many consider ASD an invisible condition, leading
others to make assumptions and judgments about the child and the parent's parenting abilities
when challenging behaviors occur (Mazumder & Thompson-Hodgetts, 2019). The high levels of
stigma related to Autism experienced in the Latino community aggravates matters further,
leading to caregiver rejection of the Autistic child (Rivera-Figueroa et al., 2022). Stigma is a
negative way someone views a person because of a distinguishing characteristic or personal trait
considered a disadvantage (Kosyluk et al., 2022). As a result of stigma and the imperceptibility
of the disorder, children with ASD endure discrimination, bullying, maltreatment, and physical
and sexual abuse significantly more than neurotypical peers or any other disability group
(Oswald, T. 2021).
Further, children with ASD are often misunderstood by others and forced to hide who
they are to fit in (Kapp et al., 2019). Society sees behaviors such as "stimming" (self-stimulatory
behaviors), a behavior autistic children use to self-soothe or reduce anxiety, as "weird," odd, or
unacceptable behaviors. A study by Yi and Siu (2021) found that Latino schoolchildren are
concerned about the extrinsic behaviors an autistic child may exhibit. However, they believed
that the autistic child's intentions were good. Nevertheless, peers inadvertently rejected and
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excluded children with ASD without the intent to harm them. Thus, autistic traits are
predominantly perceived negatively in society. The lack of education on the disorder and little
exposure to persons with ASD serve as additional culprits for the low acceptance and inclusion
of Autistic individuals in Latino communities (Rivera-Figueroa et al., 2022).
Moreover, culture, low educational levels, and the high incidences of stigma in the Latino
population regarding ASD contribute to the lack of caregiver acceptance of Latino children with
the condition (Rivera-Figueroa et al., 2022). Ignorance about the condition, spiritual beliefs, and
the assumption that the child was not parented adequately are great sources of shame and guilt
that many Latino families experience, resulting in the child's rejection. To complicate matters
further, many Latino communities have misconceptions about Autism, such as believing that the
condition is a curse from the devil because of their sins. The cultural implications mentioned
herein often create barriers to early identification and treatment of Autism, resulting in poorer
long-term outcomes for the affected children.
When Latino caregivers are concerned about their child's behavior, the family is blamed
instead of seeing these behaviors as needing discussion with a doctor (DeWeerdt, 2014). Since
Latina mothers are responsible for most of the upbringing of an Autistic child, it is not
uncommon for the husband to blame the wife for the child's condition, causing marital distress
(Whalen, 2021). Consequently, Latina mothers report experiencing heightened guilt and
humiliation, often resulting in constant stress and depression, when their child is diagnosed with
ASD (Jimenez & Jimenez, 2022). Furthermore, Latina mothers internalize the repercussions of
having a child with ASD by self-deprecating thoughts and thinking that the child has ASD due to
their wrongdoing (Blanche, 2015).
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In Latino families, the father is responsible for the entire family's well-being (Whalen,
2021). When a father cannot keep up with the demand, it causes significant stress in the family's
life. Additionally, Latino fathers tend to fear the negative community reaction to having a child
with ASD, thus engaging in social isolation. Often, the perception of being "macho" and having
strong, healthy children brings much family conflict when a born child appears weak. For Latino
fathers, having a robust, able-bodied, and well-behaved child is a great source of pride.
Therefore, fathers have high expectations for the Autistic child, and when the child does not meet
those expectations, a great sense of failure and disappointment occurs. ASD training can teach
caregivers the skills necessary to address the negative behaviors of the Autistic child, such as
how to respond effectively to kids' behaviors. Latino fathers often refuse such training (Arky &
Rouse, 2023). Unfortunately, Latino fathers find it challenging to engage in training, as the
culture perceives that men seeking help lack masculinity.
Grand Challenge
The caregiver's ability to accept, advocate, and foster positive relationships with the
Autistic child is essential to preventing behavioral health conditions, which is the core of the
Grand Challenge of Ensure Healthy Development for all Youth (Lubben et al., 2018). While
early preventive measures are critical in all youth, those with early markers of special needs are
at a heightened risk of developing behavioral health disorders and warrant special attention
(Jenson & Hawkins, 2018). Therefore, Latino caregiver acceptance and identification of
behavioral health concerns at an early age is imperative to the youth's health. The Latino
caregiver's lack of acceptance of the child's condition can hinder the ability to advocate and
access available resources early, negatively interfering with the caregiver/child relationship. It
PEQUEÑO LEONCITO 12
can often result in insecure attachments and poor emotional responses from the child with ASD
(Di Renzo et al., 2020). As a result, Latino children with ASD face marked barriers to successful
integration into society, resulting in higher incidences of behavioral health disorders, more severe
ASD symptoms, and underutilization of services (Cohen & Miguel, 2018). In contrast, studies
indicate that parents with higher acceptance of their child's Autism have fewer mental health
problems.
The author conducted a literature review focusing on children with ASD and ASD
exclusion in society (Hernandez, 2022b). The systemic review led to further searches on the
stigma of ASD in Latino communities, systemic oppression, and racial disparities in behavioral
and physical health care. Additional topics researched include (a) Latinos with ASD in schools,
(b) healthcare system disparities for Latino children with ASD, and (c) the effects of the
COVID-19 pandemic on Latino children with ASD. The primary search engines used were
Google, Google Scholar, and the University of Southern California (USC) Library. The literature
review was limited to articles from 2017 to 2023, except for a few articles relevant to the
historical context of ASD. Consistent themes found in the literature included:
• High levels of stigma associated with ASD in the Latino culture.
• Latino caregivers lack education about the condition.
• Perceptions from caregivers that providers minimized concerns.
• Rejection of the Autistic child by Latino communities emerged across the literature.
Effects on Target Population
A synthesis of the data gathered substantiates the belief that an aggravation of behavioral
health concerns occurs when Latino individuals with ASD perceive themselves as socially
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isolated and feel rejected by their caregivers and society (Hernandez, 2022b). Consequently, such
individuals are at increased risk of low self-esteem, feelings of inadequacy, guilt, and depression
(Casillas et al., 2017). The research indicated that one in three people with ASD feels socially
excluded from society (Heasley, 2013). Furthermore, one article found that nearly 40% of
children with ASD reported not getting together with friends, 50% never received phone calls or
were invited to social activities, and 28% had no social contact (Azad et al., 2016). In the Latino
population, the discriminatory practices were significantly higher.
Additional findings alluded to the disparities in behavioral health care among children
with ASD. While children with Attention-Deficit/Hyperactivity Disorder (ADHD), Down
Syndrome, and other behavioral health conditions have many specialized providers available to
treat them, children with ASD often experience multiple barriers to accessing care (Drahota et
al., 2020). It is not uncommon to not find any ASD-specialized providers in large urban areas.
For example, there are 8,184 behavioral health facilities in the U.S., but only 12.7% reported
having a trained clinician specializing in ASD, and only 4.3% had a specialized program (Cantor
et al., 2020). Moreover, finding a Spanish-speaking provider is even more challenging, posing a
significant barrier to Latino caregivers accessing care.
Nevertheless, the research indicates other substantial inequities in health care for Latino
children with ASD (Hernandez, 2022). For example, while the average age of diagnosis is three
years old, Latino children are often diagnosed with ASD two and a half years later than their
White counterparts (Junco & American Academics of Pediatrics, 2020). Moreover, barriers such
as system racism result in Latino children often being misdiagnosed before being given an ASD
diagnosis, thus delaying receipt of the services crucial to their well-being (Rentz, 2018).
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Likewise, inequities in the services Latino children with ASD receive in special education
classes are prevalent (Brundeen, 2020). For instance, Latino students are 45% more likely to
experience restraint or seclusion than their White counterparts (Katsiyannis et al., 2020). Another
example of the systemic disparities that Latino children endure within the school system was
reflected in an interview that the author conducted with a school teacher. Based on her
observations, the teacher reported that when a White child misbehaves, those behaviors are often
dismissed or attributed to the child's condition; however, if a Latino child misbehaves, he is
treated harsher, and there are often judgments about the family dynamics.
Furthermore, the COVID-19 pandemic deprived Latino children with ASD of the services
essential to their welfare. Many Latino children with ASD depend on the school system to
provide services such as speech, occupational, and physical therapies, all services lost during the
pandemic, resulting in detrimental consequences to their health (Genoval et al., 2021). Adding to
the already high levels of psychosocial stressors experienced by Latino caregivers, school
closures resulted in increased behavioral problems such as aggression, hyperactivity, meltdowns,
oversensitivity, increased "stimming," and toileting issues in children with ASD. Further, the
regression of previously acquired skills was common, per caregiver reports.
Stakeholder Understanding of the Problem
To better understand the problem, the author conducted ethnographic interviews and
observations, which concluded that the high levels of rejection and stigma about ASD in the
Latino population derive from a lack of education about the disorder (Hernandez, 2022b). Stigma
and discriminatory practices were notably prevalent amongst many stakeholders, including peers
of Latino children with ASD. The word Autism generally had a negative connotation to most
PEQUEÑO LEONCITO 15
peers interviewed. Out of 12 peers (children of approximate ages and grade levels as the
beneficiaries) interviewed, all except two reported fearing people with ASD, reporting that they
tend to be unpredictable and possibly aggressive. Most peers expressed how they, at one time or
another, felt people with ASD were "weird." Furthermore, peers reported that if they "hung" out
with Autistic children, they would experience negative repercussions from their friends. Notably,
if the fear of judgment was absent, all peers reported being willing to interact and include
children with ASD in their activities.
Notwithstanding, interviews with Latino caregivers revealed that 100% of the parents or
guardians reported fears of being misjudged, discriminated against, or criticized by neighbors,
leading to increased social isolation (Hernandez, 2022b). Interviews of the younger children or
those on the severe end of the spectrum resulted in themes of generally being happy most of the
time and feeling loved by family. In contrast, the verbal beneficiaries identified the theme of
"being treated differently" in schools. Central themes amongst the professionals interviewed
included the need for further education, acceptance, and representation of ASD in society.
As a Latina female and mother of a child with ASD, the author gained a personal
perspective regarding the stigma associated with ASD in the Latino community. The cultural
pressures led to the author's minimization of the child's symptoms when going to doctors and to
dismiss behaviors that were clear red flags of ASD, thus delaying treatment for her child in the
most crucial years of brain development. Like most Latina mothers, shame and a sense of doom
came with the child's diagnosis.
When the author's educational level empowered her to understand that her child's
behaviors were problematic, the systemic racism that Latino caregivers endure became evident.
PEQUEÑO LEONCITO 16
While the author lived in New York City, access to health care was complicated, and
appointment delays were prevalent. At appointments with the specialists, the author's suspicions
that her child was not developing typically went unheard by multiple professionals for almost
three years. Nine specialists dismissed her concerns before obtaining a formal diagnosis for her
child. To compound matters further, the implicit biases of the professionals the author
encountered portrayed her as the typical hysterical Latina woman, resulting in the author's
questioning her maternal instinct.
Conceptual Framework/Theoretical Framework
Stigma related to ASD leads to isolation and delayed acceptance of the Autistic child in
the Latino culture (Stahmer et al., 2019). Latino parents frequently perceive the ASD diagnosis
as traumatic, shocking, and painful. Moreover, disclosure of having a child with a disability to
family members results in dismissiveness and doubts about the caregiver's concerns.
Additionally, many Latino communities attribute ASD behavioral problems to a need for
discipline. Mitigation of the negative views of Latino caregivers associated with ASD can occur
through the provision of education on ASD and the creation of parental empathy for the child.
What is more concerning is that few professionals are trained to understand the cultural
beliefs and family values related to Autism in Latino communities, posing another barrier to
access to care (Casillas et al., 2017). The lack of culturally informed medical providers results in
the reluctance of Latino caregivers to bring concerns to their doctors out of fear of being
misunderstood, misjudged, or questioned about their parenting skills (Clark & Adams, 2020). To
address the need for professional education, the proposed solution includes a pre-curriculum
model where professionals receive instruction on the cultural underpinnings associated with
PEQUEÑO LEONCITO 17
Autism in the Latino community. Hence, this helps to create a more "friendly" environment
where Latino caregivers are more apt to develop a trusting relationship with the professional,
thus facilitating the expression of concerns for their child without fear. With prevention being the
crux of the Grand Challenge of Ensure Healthy Development for All Youth, educating providers
on the Latino culture is imperative to ensuring early interventions.
The conceptual framework used to create the curriculum, Pequeño Leoncito (Little Lion),
builds upon the Transformative Learning Theory, a theory of change. The essence of the theory is
that authentic learning derives from the ability to focus on different understandings of old
perspectives and create new perspectives based on emotional and logical challenges to previous
understandings (Valamis, 2023). The Pequeño Leoncito curriculum engages caregivers in
critically reflecting on previously acquired misconceptions, questioning stigmatized, biased
beliefs about ASD, and refuting the myths associated with the condition (See Logic Model,
Appendix A). The Transformative Learning Theory guides the training format, ultimately
resulting in caregivers with objective, reality-based beliefs about ASD that are accepting of the
Autistic child and who challenge the overarching communities' ASD stigma (see Appendix B).
The research indicates that educated caregivers are better equipped to promote, discern,
and incorporate knowledge into others, successfully disrupting the norm of ASD stigma in their
communities (Stahmer et al., 2019). Given the right circumstances, the goal of Latino caregiver
engagement in the Pequeño Leoncito (Little Lion) curriculum is attainable. To facilitate the
engagement of Latino caregivers, the program intends to ease the burden of Latino caregivers
having to adhere to daily responsibilities such as cooking or child care. Thus, when classes are in
session, dinner will be available, in addition to free child care. In-kind donations from local
PEQUEÑO LEONCITO 18
Latino restaurants will ensure caregivers have a full meal during dinner while at the program.
Further, two board-certified behavioral analysts have volunteered their time to care for the
children while caregivers are in class, reassuring the caregivers that the children are being cared
for by professionals in the field. To further motivate caregiver engagement in the curriculum, the
program provides an incentive through a Visa gift card to caregivers who complete the program.
The curriculum addresses the language barriers and lack of information on ASD, which
are additional challenges to understanding and accepting the condition (Cromarty et al., 2022).
Furthermore, culturally responsive education as a best practice is considered the gold standard
for Latino learning. Turnock et al. (2022) found that education is pivotal to unwrapping the
myths associated with ASD. Thus, the proposed solution, an Autism curriculum focused on the
Latino experience, aims to alleviate the challenges and barriers identified by providing culturally
responsive education on ASD, resulting in caregivers that feel empowered, become greater
advocates for their children, seek services earlier, and gain acceptance of the Autistic child.
Unfortunately, the Latino community has done a poor job shifting its views to a culture of
acceptance and inclusion. The Pequeño Leoncito (Little Lion) curriculum aims to lead to a
cultural shift in the Latino community on ASD, as this is invariably the best approach to
achieving acceptance.
Logic Model
The logic model's progression follows the core steps of the Transformative Learning
Theory; it aims to describe the processes needed to reach the goal of ASD acceptance in Latino
caregivers (Valamis, 2023). The model guides the facilitator through the transformative learning
process in adults (See Appendix A). Short-term outcomes include disorienting dilemmas in
PEQUEÑO LEONCITO 19
which caregivers begin to evaluate past ideas and engage in self-examination. The intermediate
outcomes include the caregiver's engagement in critically assessing assumptions and planning a
course of action by creating new unbiased beliefs. The caregiver's newfound education leads to
liberation and relief from societal pressures to have typical children, resulting in greater
acceptance of the Autistic child (Casillas et al., 2017).
Project Description
The proposed solution, The Pequeño Leoncito (Little Lion): A Curriculum, Focused on
the Latino Experience with Autism, aims to offer culturally responsive and relatable education to
Latino caregivers of children with ASD. The embedment of the curriculum within impoverished
Latino communities results in ease of access (Hernandez, 2022a). However, under exceptional
circumstances, the curriculum may be facilitated in the caregiver's home, ensuring the program
meets the needs of caregivers in marginalized communities or those unable to travel due to
physical limitations. Moreover, caregivers will have the option of enrolling in the Spanish
version of the curriculum. The criterion for enrollment in the curriculum includes 1) an
established diagnosis of ASD for the child, 2) the child must be one to five years old, and 3) the
participant must be a direct caregiver who is part of the Latino culture. Lastly, the curriculum
includes a short online training for professionals on cultural responsiveness with Latino
caregivers, including extended families of children with ASD.
A nonprofit organization will implement the curriculum during its initial stages, with
plans to convert it to a hybrid model during the later phases of development. The Board of
Directors will provide high-level oversight of the organization. Initially, the Board of Directors
will comprise six professionals in the field, beneficiaries, and community leaders, with plans to
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expand and recruit a more extensive diversity of members. The Board of Directors are essential
to the curriculum's continued development; iterative process; and implementation; they play an
active role in ensuring the organization's structure, providing financial and management
oversight, ensuring compliance with legal and ethical standards, and keeping the organization
true to its mission (Ea, 2023). The primary roles of the Board of Directors include ratifying
amendments, approving changes in the curriculum, significant expenses, and electing future
members. The board members will meet monthly and make decisions via majority vote.
The curriculum consists of three two-hour sessions occurring weekly, in person, at a local
church (Hernandez, 2022b). A Licensed Clinical Social Worker will provide the class instruction.
The instructor will share the same culture as the participants; classes will be in Spanish and
English, contingent upon the community's needs. The support staff will accept referrals via email
or phone call. The largest referral source expected is from the local school district. However,
referrals from multiple sources, such as community agencies, local behavioral health providers,
and self-referrals, will be accepted. The program's support staff will contact the caregiver to
schedule a pre-curriculum assessment after the referral. Classes will accommodate a maximum
of 10 caregivers during early evening hours. The first session will be devoted to a brief overview
of culturally informed Autism education with ample opportunities for caregiver exchange of
experiences, cultural pressures, and feelings associated with having an Autistic child, in addition
to education on the early symptoms of behavioral health conditions.
The literature indicates that simulated Autism experiences are highly efficacious,
resulting in participants positively changing their perspective toward Autistic individuals and
creating a sense of empathy (Sarge et al., 2020). Therefore, since empathy is a crucial component
PEQUEÑO LEONCITO 21
of ASD acceptance, the second curriculum session will include an Autism simulation experience
(Hernandez, 2022a). Caregivers will experience the effects of overpowering flashing lights,
screeching noises, and disorienting colors via a virtual reality platform that mimics the sensory
overload that Autistic individuals endure. Following the simulation experience, caregivers will
engage in a debriefing session. Moreover, a critical discussion of misperceptions, myths, and
previous erroneous beliefs will occur. Finally, to address the possible unintended consequences
of caregiver distress due to the intensity of the simulation experience, the facilitator will
complete a "check-in" call three days after the second week of course completion.
The final session will focus on empowerment, advocacy training, and resource allocation
(Hernandez, 2022a). The caregivers will engage in a constructive discussion about the new
perspectives acquired, changes in perceptions, and lessons learned. During the last hour of the
class, the focus will be on coaching caregivers on promoting ASD acceptance in their
communities, demystifying the biased beliefs associated with Autism, and discussing the next
steps. Graduating caregivers will be provided referrals to ongoing behavioral health services at
one of the local mental health clinics with which the author has contracted. Lastly, the caregiver
will receive a certificate of completion before class ends and partake in a post-course assessment
and course evaluation, followed by signing consent forms for follow-up assessments and staff
"check-ins" for the following year.
The Pequeño Leoncito (Little Lion) curriculum pilot occurred in St. Joseph's Catholic
Church, centrally located in an impoverished Latino community, part of Poughkeepsie, NY . The
author will implement the curriculum in the exact location where the pilot took place, as the
church setting is secured. Preliminary feedback suggests the curriculum will be a welcomed asset
PEQUEÑO LEONCITO 22
and successful in the community due to high demand and no availability of such programs.
Additionally, the curriculum adheres to best practices when educating the Latino population,
which include: (a) providing culturally sensitive materials and information,; (b) speaking in their
native language whenever and (c) demonstrating a fundamental understanding of their cultural
beliefs and identity (Lopez et al., 2019). While the proposed solution requires investments in
time and funding, the curriculum will result in greater acceptance from caregivers for the Autistic
child, leading to increased utilization of services that can prevent behavioral health conditions,
making it a worthwhile investment.
Theory of Change
See page 15 for the discussion on the theoretical framework and theory of change.
Solution Landscape
Existing solutions to the problem include the delivery of evidence-based practices (EBP)
in schools with caregiver inclusion, attempts to integrate children of special needs with typically
developing children, and expanding the school's communication platforms to better communicate
with caregivers (Hess, 2023). Barriers to the identified solutions include a lack of teacher fidelity
when implementing EBP's and systemic racism, which influences the child's assignment in
integrated classes and communication with the caregivers. Communication through the platforms
that schools have implemented is often not tailored toward Latinos with limited education and is
usually not readily accessible in Spanish (Casillas et al., 2017).
Broader scope solutions and governmental interventions include the Affordable Care Act
(ACA) passage. While ensuring that all individuals have health insurance is essential to access
care, caregivers need the ability to recognize the symptoms of ASD; feel safe in reporting their
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concerns to their providers; accept the ASD diagnosis, and learn to advocate for their child
before accessing care is possible (Genova1 et al., 2021). The proposed solution includes an
online training component for professionals on cultural responsiveness. The training intends to
increase cultural competency in the professional, resulting in a greater understanding of the
inherent aspects of the Latino culture that serve as barriers to care. Additionally, when providers
are culturally responsive, engagement levels with Latinos increase (Aylward et al., 2021).
Moreover, campaigns to promote awareness and inclusion are prevalent; however, rarely
are they in Spanish or enabled in a language tailored toward Latinos with low education levels.
Nevertheless, including children and adults with ASD in movies, magazines, T.V . series, and
social media are attempts to create a more accepting and inclusive society; often, these attempts
result on the contrary effect (Gambacurta, 2020). Unfortunately, these public opportunities are
few and often portray a person with Autism in stereotypical, odd, eccentric ways. People with
Autism are often seen as savants, mute, or have special powers, which does not accurately
represent the Autism community. The mis-portrayal of Autistic individuals aids in the further
stigmatization and discrimination of such individuals.
Lamentably, while the existing solutions hold promise for the future, the foundation of
the problem remains unaddressed. For example, the current solutions do not address the
stigmatized beliefs about ASD in Latino communities, which often leads to rejection of the
Autistic child, thus hampering early access to care. Additionally, some Latino caregivers may not
understand or accept the diagnosis or are unsure how to manage the stigma in their community.
Notwithstanding, the research that prevails is based on research conducted primarily
with White middle-class children and may not represent the Latino child with ASD, thus,
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creating confusion in the Latino caregiver.
The Pequeño Leoncito (Little Lion) curriculum encompasses all the elements missed by
the existing solutions. The curriculum bridges the gaps in existing solutions by providing
culturally responsive education to Latino caregivers in their native language and with the
facilitator's intrinsic knowledge of the culture and ASD manifestations in Latino children.
Further, the curriculum's component of an Autism simulation experience has proven to produce
empathy for Autistic individuals, regardless of educational level, language spoken, or education
on the condition, as the simulation is experienced through the use of senses such as touch, smell,
and hearing (Sarge et al., 2020). Lastly, the curriculum's focus on caregiver acceptance of the
child with ASD and developing feelings of self-efficacy creates a gateway to support community
involvement and an opportunity to educate others about ASD inclusion. In essence, the
curriculum is comprehensive and addresses many of the barriers Latino families face when
having their child diagnosed with ASD, unlike any other training in the literature.
Prototype Description
The Pequeño Leoncito (Little Lion) prototype reflects the educational needs of Latino
caregivers of children with ASD. The prototype outlines the pre-implementation networking
required to ensure a comprehensive referral source, community connections, and post-curriculum
follow-up support. Furthermore, the prototype includes the step-by-step processes for forming
collaboratives with reference groups and identifying community champions to aid Latino men's
engagement. Next on the prototype is a detailed curriculum outline and a link to a short online
provider training on Latino cultural responsiveness. The prototype culminates with a PowerPoint
presentation to facilitate the curriculum (See Appendix C).
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The curriculum ties into the Grand Challenge of Ensure Healthy Development for all
Youth, as caregiver acceptance of the child's ASD directly impacts the child's emotional stability
(Rivera-Figueroa et al., 2022). Moreover, caregiver acceptance of the child's condition is crucial
to identifying possible symptoms of behavioral health conditions that are preventable or
ameliorated if services are sought early. The CDC (2023) estimates that 70% of children with
ASD have at least one behavioral health comorbidity; thus, Latino caregivers need access to
culturally responsive education to gain an understanding, knowledge, and skill that may aid in
the prevention or aggravation of mental health conditions (Ivanović, 2021). Education to
facilitate parental understanding of Autism can potentially offset the increased risk of behavioral
health disorders in such children.
Likelihood of Success
A study conducted by Dawson-Squibb et al. (2019) concluded that caregiver training on
ASD positively impacts the long-term prognosis of the Autistic child's behavioral health.
Educated caregivers seek services earlier; advocacy and acceptance levels increase (Koegel et
al., 2020). Additionally, teachers who undergo professional development training on ASD and
culture responsiveness demonstrate enhanced perceptions, increased knowledge, attitudes, and
greater self-efficacy, leading to greater engagement with Latino families and increased fidelity to
evidence-based practices (Bolourian et al., 2021). The successful pilot of the curriculum and the
positive results of the pre-and post-curriculum assessments indicate a likelihood of success upon
curriculum implementation. The assessment results showed substantial growth in targeted areas,
such as ASD knowledge and empathy levels toward the Autistic child (see Appendix D).
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Success is defined by meeting the curriculum's vision of creating Latino communities that
are judgment-free, inclusive, empathic, and accepting of the child with ASD. The mission is to
equip Latino caregivers of children with ASD with the skills needed to create accepting and
welcoming environments, become arduous advocates, and play a key role in disrupting the norm
of stigma in their communities.
Methodology
Human-Centered Design
To create the proposed project, the author utilized a Community-Based Participatory
Research (CBPR) process to identify the problem the beneficiaries perceive. The process
included engaging Latino community members in ethnographic interviews, discussions, and
observations of those in the child's micro and mezzo systems. Those interviewed had family
members, school teachers, other professionals involved in the child's life, and beneficiaries of
varied ages and functioning levels to ensure a wide-scope perspective of the problem. Moreover,
the questionnaires distributed alluded to caregiver knowledge about Autism, influences of
stigma, and cultural pressures within the community.
The Assessment of the qualitative data gathered led to the conclusion that the high levels
of stigma were at the root of the lack of acceptance of the Autistic child. Through this process,
caregivers substantiated the literature reports of Latino caregivers feeling that Autistic children
were a source of guilt, shame, and embarrassment and were often associated with punishment
from God for wrongdoings (Hernandez, 2022b). The erroneous beliefs of the Latino caregivers
led them to isolate and hide their children from community members out of fear of community
repercussions. The parents and extended family members perceived that family and friends
PEQUEÑO LEONCITO 27
would ridicule them and judge their parenting skills. Unfortunately, the beneficiaries' fears were
consistent with the themes found when interviewing community members.
Design Criteria
The stigma associated with a disabled child in the Latino culture is deeply rooted. The
author's ethnographic interviews corroborated the literature review's findings; it appears that the
stigma in the Latino culture stems from an absence of education and exposure to individuals with
ASD (Dawson-Squibb et al., 2019). Most caregivers interviewed knew little about ASD and
believed it was a condition associated with White middle- to upper-class boys (Hernandez,
2022b). Notwithstanding, the author hypothesized that a potential solution to the problem had to
be educationally based. Other themes derived from the author's community immersion included
low empathy levels for the Autistic child by caregivers and the caregiver's thoughts that the
child's disruptive behaviors were purposeful. The process further concluded that a good solution
must be: a) focused on Latino caregivers; b) easily accessible; c) free of cost; d) short-term; e)
convenient; f) create a sense of self-efficacy, and g) be culturally responsive (See Appendix E).
Market Analysis
Unquestionably, there are many programs on ASD in the market, but none offer courses
that are culturally responsive to the specific needs of Latino caregivers. The programs appear to
be a mere translation of Autism education in Spanish; they are intended for the mainstream
culture and exclude cultural influences that may affect caregiver advocacy and service allocation
(Hernandez, 2022b). Culture is entrenched and centric in Latino families; ignoring this integral
part of their identity results in rapid disengagement, lack of interest, and reluctance to participate
in training (Gonzalez & Morrison, 2016). Further, the online training failed to address the low
PEQUEÑO LEONCITO 28
engagement rates of Latino caregivers in such programs. Additional concerns not addressed by
the caregiver training include systemic racism, the lack of cultural competency in providers, and
the etiology of Latino caregiver rejection of the Autistic child. In essence, the programs available
fail to address the crux of the problem, thus enlisting superficial education on Autism with
minimal effect on Latino families.
Financial Plans
See the budget section on page 31 for the discussion on Financial plans.
Implementation Strategies
The author will use implementation strategies to launch the curriculum, including
dissemination, implementation process, and integration strategies (Kirchner et al., 2017). The
author will use the dissemination strategies of delivering critical messages, brochures, and flyers
to the relevant audiences. Additionally, the author will assess the stakeholders' awareness and
motivation and leverage it to support the implementation of the innovation. Implementation
strategies will consist of continued re-iteration, Assessment, and requesting stakeholder feedback
to continuously adapt and improve the curriculum. Lastly, the author will use integration
strategies to keep the staff roles fluid with openness to frequent updates and revisions to the job
roles during the beginning phases of implementation. The combination of such strategies will
allow for a continuously growing, expandable, and flexible model in its delivery.
Methods for Assessments of Impact and Social Change
It is imperative to have data demonstrating the positive impact on the community and the
benefits that have risen from the program to maintain its sustainability of the program (National
PEQUEÑO LEONCITO 29
Academies Press (U.S.), 2017). Therefore, caregivers enrolling in the program will complete an
initial assessment questionnaire, a post-course assessment, and assessments at the three, six,
nine, and one-year marks after curriculum completion (See Appendix F). Baseline data on
Autism knowledge, cultural influences on the family, and misconceptions associated with ASD
will serve as the baseline for comparison with future assessments. In addition, the evaluation of
the impact on caregiver feelings of self-efficacy increase in advocacy skills, resourcefulness, and
Autism acceptance levels will be re-assessed quarterly. The impact and social change will
become evident one year post-curriculum completion. Once a year's worth of data is collected,
the author will analyze the data to evaluate the effects, positive life changes, and growth
facilitated by the education received by the caregivers who completed the curriculum.
Stakeholders Involvement
Stakeholders (micro-level) include caregivers; peers; school teachers; case managers, and
therapists. The caregiver's involvement is critical to the long-term prognosis of the Autistic child.
Caregivers who have insight, are in tune with the child's needs and accept the child for whom
they are the most significant influence on a child's confidence and feelings of acceptance in
society later in life (Di Renzo et al., 2020). Teachers can encourage neurotypical children to
include and accept children with ASD in their activities. Therefore, they are crucial in creating
ASD acceptance (Gómez-Marí et al.). Acceptance and inclusion of children with ASD with their
neurotypical peers create positive cognitive and social development outcomes.
Likewise, therapists and case managers directly shape and influence the Autistic child's
life. An effective, evidenced-based, trained therapist can teach the family how to become
proactive in the child's development, address problematic behaviors, and teach the child with
PEQUEÑO LEONCITO 30
ASD to be independent, thus increasing the chances of social acceptance (Spain et al., 2017). The
case manager can help to ease the familiar burden by empowering the family with knowledge
about resources and assisting with access to services (Davis, 2022). Additionally, case managers
can ensure that care coordination services are in place and that patient-centered care is accessed.
The macro-level stakeholders include the government, the Office of Developmental
Disabilities, and Child Protective Services. Although these systems usually do not have direct
interactions with children with ASD, they may serve as overarching protectors of the child with
Autism, which ultimately affects the family unit and influences caregiver acceptance (Callaghan
& Sylvester, 2019). Lastly, the author and support staff will meet regularly with school district
administrators, priests, and other relevant networks, as their influence is vital to the referral
process and caregiver engagement to assist with the election of champions (See Appendix G).
Communication Strategies
Effective communication strategies are crucial to successfully implementing the Pequeño
Leoncito (Little Lion) curriculum. Therefore, the program's strategies include quarterly in-person
meetings with key stakeholders to ensure ongoing communication. Networking with community
agencies, schools, and local establishments will remain ongoing via social media platforms and
email, as they are critical to fostering and creating a positive reputation (Ibarra, 2019). Zoom will
be used for virtual meetings when live meetings are not an option. Additionally, other virtual
platforms will serve as secondary modes of communication. Different communication strategies
include the development of a curriculum website to house detailed information about the classes’
future directions and to allow for the delivery of donations. Social media accounts, e.g.,
PEQUEÑO LEONCITO 31
LinkedIn, Facebook, and Twitter, are active, and the use info-graphs, brochures, social media
promotion, and word of mouth (See Appendices H and I).
Implementation Plan
Methods for Implementation
The development and implementation of the Pequeño Leoncito (Little Lion) curriculum
are estimated to take one year. During the first quarter, the developer conducted extensive
Community-Based Participatory Research to explore the cultural implications of ASD and the
educational needs of Latino caregivers, thus creating a solid approach to the program. During the
second quarter, a multidisciplinary team (e.g., psychiatrists, developmental pediatricians, and
psychologists) with expertise in ASD became an integral part of the curriculum development,
resulting in their attestation to the validity of the curriculum based on the gold standards for
educating Latino caregivers. The program is in its third quarter, which includes leveraging
networks and professional affiliations to ensure access to funding opportunities. The last phase,
which will take place in the first quarter of 2024, will be the curriculum launch and the online
training for professionals, with follow-up phases of curriculum adaptations (See Appendix J).
EPIS Implementation Framework
The EPIS framework has guided our implementation plan. The program will use the EPIS
Framework of implementation due to its comprehensive four-stage framework that most
organizations easily understand. Additionally, the framework's examinations of influences from
different levels create an objective view of the challenges and the positives from multiple angles
of the implementation plan. The EPIS framework has four components: the Exploration,
PEQUEÑO LEONCITO 32
Preparation, Implementation, and Sustainment phases (Moullin & Aarons, 2022). Within these
areas are inner and outer contexts, including barriers and facilitators that drive implementation.
The Exploration Phase looks for the existing need in the community to identify if the
evidenced-based programs will address the need (Moullin & Aarons, 2022). The increase in
Latino children with an ASD diagnosis serves as an outer context facilitator during the
exploration phase of implementation. However, a barrier would be the lack of government
funding available to provide training for caregivers of Autistic children. In contrast, the support
of the local government in the community where the author will implement the curriculum serves
as an inner context facilitator of the exploration phase. A barrier is the challenges encountered in
obtaining the ASD simulation software.
The Preparation Phase addresses the need for adaptations and assesses the potential
barriers and facilitators to implementation to capitalize on the facilitators and address the barriers
(Moullin & Aarons, 2022). The literature substantiates the need for Latino caregiver education on
ASD, which serves as an outer context facilitator for the preparation phase of implementation.
A barrier is a difficulty obtaining male role models to act as champions for male caregivers.
Collaborations with community organizations and local churches facilitate the
curriculum's inner context preparation phase. However, a potential barrier is the limited
availability of in-kind donations and volunteers.
The Implementation Phase is when the evidenced-based practice is initiated (Moullin &
Aarons, 2022). The increased awareness in society about the need for ASD training serves as
an outer context facilitator for the implementation phase. However, a barrier is a need for more
PEQUEÑO LEONCITO 33
reliable referral sources for the curriculum. An inner context facilitator is the teacher demand for
ASD training for caregivers. A barrier is the small number of affordable settings.
In the Sustainment Phase, the supports, processes, and structures adaptations occur to
ensure continued delivery of the evidenced-based practices (Moullin & Aarons, 2022). The
CDC's prediction that the rates of ASD will rise is an outer context facilitator in the sustainment
phase of the implementation (CDC, 2022). The limited funding for scaling to other states is
a barrier. An inner context facilitator for the sustainment of the program is the need for ASD
training facilitated in Spanish. A barrier would be cultural influences that make Latino
caregivers challenging to engage in curriculums (See Appendix K).
Budget
Funding sources will be varied. Possible sources of revenue include grants offered by
organizations such as Autism Speaks, the William Randolph Hearst Foundation, and the Karma
Foundation, whose priorities align with that of the proposed program. Furthermore, the author
will submit applications to other federal, state, local, and private grants and philanthropic and in-
kind donations (Hernandez, 2022b). Other sources of revenue will consist of fundraising events
and private donations secured through the curriculum's website.
During the start-up period of six months, the program will staff six employees, including
the facilitator, an assistant, an information technologist, a maintenance person, and two support
staff. The estimated cost to implement the program during the "start-up" period is $175,000,
which grants will support (See Appendix L). Employees will have competitive salaries, which
include fringe benefits. Employee salaries comprise the second largest expense, totaling
$16,861.00 (Pratt, 2023). The facilitator and her assistant will work 10 hours per week, the
PEQUEÑO LEONCITO 34
support staff will work six hours per week, the information technologist will work two hours per
week, and the maintenance person will work 3 hours per week. The most considerable cost in the
start-up period will be from purchasing the Virtual Reality (V .R.) equipment, totaling $105,164
("Dell search," n.d.) (See Appendix J). During the first year of operations, staff salaries and
benefits compose the highest expense, totaling $72,606.40. Occasional variable costs include cell
phones, staff training, and travel expenses, while consistent variable costs include office supplies
and teaching materials (See Appendix M).
Methods for Assessment
The discussion on methods for assessment is on page 27. Stakeholder involvement and
communication strategies are on pages 28 and 29, respectively.
Challenges
The primary challenge the curriculum faces is the possibility of not obtaining funding.
Funding sources are crucial to the implementation and sustainment of the program. However, the
program can run on a volunteer basis. The Autism simulation equipment is costly and essential to
the training program. An additional obstacle would be the need for caregiver engagement.
Stigma about Autism is prevalent in the Latino community. Thus, it may hinder caregiver
enrollment (Walen, 2021). Moreover, Latino fathers resist training, as the culture deems efforts to
learn how to parent as a sign of weakness. Lastly, lacking community support would pose a
potential roadblock, as the training program depends on the referrals from the community.
To minimize the risk of not obtaining funding, the program will include a grant calendar
and ensure applications are submitted continuously to multiple, varied funding sources, thus
counteracting this potential obstacle to running the curriculum. Furthermore, support staff will
PEQUEÑO LEONCITO 35
share the data collected on the program outcomes with current and future funders to demonstrate
program success and opportunities for growth. Essential to the sustainability of the curriculum is
the securement of referrals. Therefore, to ensure ample sources of referrals, the author has
expanded the networking circle to include non-traditional places, such as social clubs and local
grocery stores. Continued immersion in the local community will allow for the identification of
champions and trendsetters who can aid in the engagement of Latino caregivers.
The current lack of experience with virtual reality technology is a possible limitation. In
the event of equipment failure, the author will outsource repairs. As an alternative plan, if the
virtual reality technology is defective, the author will use a compilation of ASD simulation
videos from YouTube. Notwithstanding, the extent to which the caregivers utilize the education
provided is another limitation, as the success of the curriculum depends upon caregiver fidelity
to the lessons learned. The program will provide caregivers with quarterly calls and follow-up
refreshers to counteract the possibility of a lack of fidelity.
Leadership Strategies
The Pequeño Leoncito (Little Lion) leadership base derives from the transformational
leadership style. The author, who will be the program's leader, will ensure that she is self-aware
and proactive, sets goals, and empowers employees to become independent and self-sufficient
(Boogaard, 2023). The leadership supports the ongoing professional growth of staff members; it
believes that learning is continuous and that change is a positive aspect of an organizational
structure. Furthermore, open-mindedness and humility leadership strategies define the
curriculum's leadership style. The curriculum's leadership will ensure a culture of acceptance,
diversity, and respect. Further, leaders will match staff to roles based on their strengths, and they
PEQUEÑO LEONCITO 36
will motivate, listen, and cultivate positive relationships with employees.
Ethical Considerations and Applying Design Justice Principles
The program explored the possible unintended consequences of Pequeño Leoncito's
(Little Lion) curriculum. The primary ethical concern identified was the possibility of the
caregiver experiencing emotional dysregulation due to the Autism simulation experience. The
literature corroborates that the Autism simulation experience has the potential to elicit feelings
such as shock, despair, remorse, and sadness (Couch, 2019). To mitigate the risk of potential
negative impacts of the Autism simulation experience, the author and her staff will have a check-
in call to the caregivers between classes two and three, and caregivers will receive referrals for
long-term behavioral health services. The author has carefully weighed the benefits versus the
risks of the simulation experience and has concluded that the benefits of the experience far
outweigh the risks. Autism simulation experiences are proven to create caregiver empathy
toward the child (Weinel et al., 2018). Empathy is at the core of understanding Autism and is the
foundation for creating a sense of accountability to create change.
A lesser concern is the possibility of a conflict of interest. The author is of the same
culture as the caregivers; therefore, sharing this common ground constitutes the risk of personal
biases interfering with the caregiver's learning experience. To counteract the potential for implicit
biases, the author will be mindful of her biases and have a staff member present when delivering
the classes to ensure objective perspectives. Additionally, the author will ensure to facilitate the
program with the guidance of evidenced-based practices in addition to modeling the
Transformative Theory of Change for adult learning with fidelity. The author will schedule
weekly meetings with support staff to obtain feedback on the facilitation of the curriculum, and
PEQUEÑO LEONCITO 37
the team will elicit caregiver feedback on the curriculum once completed.
The guiding principles of The Pequeño Leoncito (Little Lion) curriculum derive from
Design Justice. Design justice was a term created by the Design Justice Network. The network's
goal is to refocus the design process on one derived from the beneficiary's concept of the
problem (Canin & Canin, 2020). Design justice places marginalized people in the center of the
design and uses collaborative strategies to create practices that address challenges in
impoverished communities. As illustrated previously, the author used a design-thinking process
whereby she immersed herself in the Latino community to understand better the person
experiencing the problem. The author defined the problem collaboratively with the aid of
feedback received from beneficiaries, family members, and community members, and the design
created targets the specific needs of the Latino community.
The program's design provides a direct impact on those who are of low educational levels
and impoverished. Education about ASD emerged as the primary need in the community, as
much of the stigma associated with the condition derives from ignorance, lack of exposure, and
understanding of the condition (Gillespie-Lynch et al., 2020). Moreover, education has proven
essential to the Latino community's empowerment and liberation from oppression (Simons-
Rudolph, 2021). Second, education creates awareness, understanding, and unbiased beliefs about
ASD. Hence, it is a critical component of social change. The curriculum aims to share
knowledge that is imperative for the growth of the caregiver and the acceptance of the Autistic
child, resulting in greater levels of community inclusion.
Conclusion and Implications
Despite the well-known fact that caregiver acceptance is at the crux of successful
PEQUEÑO LEONCITO 38
integration into mainstream society and access to services, there was no ASD training found in
the literature that targeted this concern (Cage et al., 2018). The Pequeño Leoncito (Little Lion)
curriculum components of culturally responsive education facilitated in the caregiver's native
language; inclusion of an Autism simulation experience and the focus on ASD acceptance by
Latinos rather than ASD education alone, results in an innovative curriculum, which leads to the
Healthy Development of all Youth by empowering parents to seek early intervention services,
thus, preventing behavioral health conditions (Barth et al., 2022). Moreover, education is vital to
promoting tolerance and acceptance of differences in society, which is the overarching goal of
the proposed solution (Zajacova & Lawrence, 2018).
Implications for Practice and Future Use
The recent Black Swan events (rare unexpected events) have created the perfect setting
for the creation of curriculums such as The Pequeño Leoncito (Little Lion) (Ross, 2020). The
COVID-19 pandemic has brought the needs of impoverished families to the forefront of society,
creating an urgency for ASD training in Latino caregivers. While families of typically
developing children and privileged racial and economic backgrounds have been affected by these
wicked problems, the negative consequences for Latino families of impoverished communities
with special needs children were exponentially higher, thus creating a need for programs such as
the Pequeño Leoncito, which empower parents to access available resources.
The plans for scaling the Pequeño Leoncito (Little Lion) curriculum include the
program's adaptability by other organizations, particularly those settings that fit the philosophy
and structure necessitated to implement the curriculum with fidelity. School settings, community
organizations, and behavioral health clinics in marginalized Latino communities typically strive
PEQUEÑO LEONCITO 39
to engage in the Pequeño Leoncito program's best practices, making them appropriate settings
for curriculum delivery. The program's cultural responsiveness, classes in Spanish, and the
attention paid to the communities' bio-psychosocial needs encompass the best practices such
organizations strive to incorporate. The author will ensure the promotion and propagation of the
program in such organizations to secure the interest of the key stakeholders and local
government officials, as they may be vital in securing funding for the adaptation of the program.
The following steps in the program adaptation include training the organization's staff on
the program and ensuring training on cultural responsiveness. Imperative to the program's
adaptability is the author's assurance that such organizations share the same problem and goals
and are motivated to replicate the program successfully. The writer will network to form
allyships with those organizations that share the vision and mission of the program and who have
an already established space that they can utilize to implement the program. Implementing the
program in other organizations will involve securing volunteers interested in helping the
community, local leaders' support, and the author's ongoing support and training.
Advancing Next Steps
The following steps to implement the curriculum include 1) securing funding, 2)
completing the documentation to register the curriculum as part of a non-profit organization, and
3) assigning a Board of Directors. Moreover, local government support and allies from local
schools are imperative for implementing the curriculum. Thus, the process of networking and
establishing collaborations will remain ongoing. Finally, upon successful implementation and
through continuous evaluation and program modification, there are opportunities to scale the
program, including expanding to other cultures and communities across the country.
PEQUEÑO LEONCITO 40
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Appendix A
Logic Model

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Appendix B
Theory of Change
 
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Appendix C
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High Fidelity Prototype
https://docs.google.com/document/d/1ntv-yE-keEMScLd0qCHdIE7EGSMP9gx1fIet3kbxu9k/
edit?usp=sharing
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Appendix D
Assessment Questionnaire Responses from Pilot

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Appendix E
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Design Criteria

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Appendix F
Assessments and Evaluations
Pre-course and Post-course and three, six, nine and,
12 months, Post-Course Assessments (English)
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Post-course Evaluation English

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Pre-course and Post-Course Assessments and three, six, nine and 12 month, Post-Course
Assessment (Spanish)
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Post-Course Evaluation (Spanish)
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Appendix G
Calendar of Events

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Appendix H
Infographics (English)
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Infographics (Spanish)
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Appendix I
Brochure (English)

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Brochure Spanish

PEQUEÑO LEONCITO 82

PEQUEÑO LEONCITO 83
Appendix J
Gantt Chart

PEQUEÑO LEONCITO 84

PEQUEÑO LEONCITO 85
Appendix K
EPIS Framework
PEQUEÑO LEONCITO 86
Appendix L
Start-Up Budget
PEQUEÑO LEONCITO 87
Appendix M
First Year of Operations Budget

Abstract (if available)

Abstract The upswing in Autism Spectrum Disorders (ASD) diagnoses in the United States has brought to the forefront the need to "normalize" neurodivergence, a child whose brain functions differently from what is considered "normal" in the Latino community. Furthermore, the prevalence of ASD has increased exponentially, making Latinos the most prominent ethnic group with ASD (CDC, 2022). Research indicates that Latino caregivers have greater incidences of inaccurate beliefs about ASD, lack familiarity and acceptance, and the cultural implications tend to be negative, resulting in delays in accessing care (Rivera-Figueroa et al., 2022). Nearly all (98%) of children with ASD report feeling stigmatized, discriminated against, and unaccepted in society (Lodder et al., 2019). The experience is exponentially higher in the Latino community, where more than one-quarter (78%) of Latino children with ASD suffer from depression and anxiety. The Grand Challenge for Social Work, Ensure the Healthy Development for All Youth, provides the fabric to address significant societal issues by being the foundation for preventing mental health disorders in youth. The Pequeño Leoncito (Little Lion), a Curriculum Focused on the Latino Experience with Autism, with instruction in Spanish, addresses the need for education as a best practice and is the first step toward caregiver acceptance, a crucial component of parental ability to advocate and access available resources (Cohen & Miguel, 2018). The program's innovation stems from the focus on the Latino culture, the inclusion of an ASD simulation experience, and its emphasis on acceptance of the Autistic child (Hernandez, 2022). The curriculum has the potential to be scaled beyond its current context to include other cultures and expand to different geographic settings.

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University of Southern California Dissertations and Theses

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Asset Metadata

Creator Hernandez, Cynthia (author)

Core Title Pequeño Leoncito: an autism curriculum based on the Latino experience with autism

School Suzanne Dworak-Peck School of Social Work

Degree Doctor of Social Work

Degree Program Social Work

Degree Conferral Date 2023-08

Publication Date 08/03/2023

Defense Date 08/02/2023

Publisher University of Southern California. Libraries (digital)

Tag autism,neurodivergence,OAI-PMH Harvest,plasticity,stigma

Language English

Contributor Electronically uploaded by the author (provenance)

Advisor Manderscheid, Ron (committee chair), Alvarez, Lisette (committee member), Fatourous, Cassandra (committee member)

Creator Email cmh93889@usc.edu,Cyndihernandezlcsw@gmail.com

Permanent Link (DOI) https://doi.org/10.25549/usctheses-oUC113296152

Unique identifier UC113296152

Identifier etd-HernandezC-12186.pdf (filename)

Legacy Identifier etd-HernandezC-12186

Document Type Capstone project

Rights Hernandez, Cynthia

Internet Media Type application/pdf

Type texts

Source 20230803-usctheses-batch-1078 (batch), University of Southern California (contributing entity), University of Southern California Dissertations and Theses (collection)

Access Conditions The author retains rights to his/her dissertation, thesis or other graduate work according to U.S. copyright law. Electronic access is being provided by the USC Libraries in agreement with the author, as the original true and official version of the work, but does not grant the reader permission to use the work if the desired use is covered by copyright. It is the author, as rights holder, who must provide use permission if such use is covered by copyright.

Repository Name University of Southern California Digital Library

Repository Location USC Digital Library, University of Southern California, University Park Campus, Los Angeles, California 90089, USA

Repository Email cisadmin@lib.usc.edu